Sunday, September 12, 2010

All goode

I know we haven't posted much on here of late, but no news is good news. Both Rachel and I are avid facebook users, so feel free to friend request us there. At any rate, Kevin has been feeling very well. Summer came and went, and unlike 3 or 4 years ago, Kevin was not pleased that his summer vacation came to a close and school began. He's changed and matured so much during his journey. He's so polite and well spoken. Rachel and I are both amazed at how he's navigated this journy and some how became a polite, humble, person who doesn't expect any special treatment. He's in 5th grade now, which is scary because in slighly less then a year he'll be in middle school......ugghhhh!!!!..........But I suppose that's my issue, he's getting older and there's nothing I can do about it. Our entire family is proud of how he's continued to gain strength, and grow (from a maturity and emotional perspective). He's now on Growth Hormone. Rachel or I have to inject him once a day every evening. To be honesty, after everything he's gone through, and with all the experience we have with TPN (nutrition through his hickman) and all his meds, a once a day injection isn't so bad. We've been told the growth hormone won't only help him rocover some lost height, but should also be helpfull towards his overall all energy. I guess people (whether children or adults) who's body's don't produce appropriate growth hormone levels suffer through a litany of symptoms in additon to lost height. Hopefully Kevin's daily injections will help him with more then just growth. Tomorrow we meet with his teacher, the Principal and other staff members. He's a precosious intelligent boy, but radiation/brain surgery/chemo has produced some challenges in his accademic endeavors. It's our job to make sure he's given every possible chance to succeed. ............On another note, Kevin's last visit in late August was the last on his every 3 month protocol. Kevin reached the anniversary of 2 years clean scans after treatment. He now will go to St. Judes every 6 months instead of every 3. We've learned to embrace every achievement small or large during this arduous process. Less school missed, less work missed, and less sleep lost over pending MRI's. ........all around a good thing.

I hope everybody enoyed their summer, and is enjoying the fall.


Saturday, June 12, 2010

June '10

We just completed month 27 on Kevin's protocol. This number is derived from the time Kevin was accepted into St. Judes on the SJMB03 protocol. This protocol and it's accompanying timelines and benchmarks are important parts of our live's. In the beginning, Dr. Gajjar made sure we didn't look to far ahead....This could be overwhelming, and the objective back then was simply to get Kevin through radiaton and high dose chemo in fair health (relatively speaking) and void of even a trace of a tumor. Our life was all about very short term goals. I'm happy to say that we're looking at long term goals now, and for the average, healthy child this is probably taken for granted. But when Dr. Gajjar talks about things a year away, and the Endocronologist talks about what we should prepare for when he hits puberty.........well it's a modest, yet meaningful milestone. We no longer talk about the next 3 or 4 weeks, it's now about the next several months and even years. We're not out of the woods, as it was made so painfully clear by a family we met. Their child is doing great, but they told us of another medullo patient who's had a recurrence. He's actually about 1 1/2 years behind Kevin in his protocol, and we've met them during 3 of our visits. He's a 3rd grader who is like Kevin in so many ways. He's bright, thin, precotious, inquisitive, and very, very brave. At any rate, his mother eloquently explained to me that Kevin's a role model for their son (I'm so embarassed that at this midnight hour I forgot his name........I'm sooooo horrible with names, but not faces), as they've celebrated Kevin's impressive progress, using it as a benchmark for their own son. It felt so good to be in that place, where Kevin's now a model for success and progress, as opposed to when we were haning on to anything for a glimmer of hope. Kevin's now what Steven, Ethan, and Heather (even though she was only a month or two ahead of Kevin, which is indicative of how our goals were in baby steps for a while). So in a nut-shell, life is good. We have many things to deal with over the course of the next several years, but taking everything into consideration, like Steven, Heather, and Ethan, he's doing incredibly well. I met a lot of wonderful people this last trip, who made quite the impression on me. I'm grateful for so many things, above and beyond Kevin's health.

Kevin's appt. is set for mid July for the Endocronolgist. At that point he'll start Growth Hormone. It's a bit scary, as Kevin hates needles, but it's something we'll get through. Also, Kevin's been doing ver well in school. He's a bit forgetfull in homework (we're working on this), but he's done exceptional on test. Overall, things are great.

Happy Summer!


Saturday, January 23, 2010

Update early 2010

Once again it's been a very long time. Happy belated New Year to everybody. We're nearly 2 years from the beginning of our journy. I've re-lived the pain quite enough though, this blog entry is about the incredible strides Kevin's been making. Today, Kevin played in his first organized basketball game since he was in second grade (when he was diagnosed). Although I'm an avid sports fan and participant, I've not pushed Kevin back to organized sports. He's been through an awfull lot, and we all wanted to make sure he was physically and psychologically ready. A few months back Kevin told me he wanted to play basketball again. We signed him up and all was set, Kevin would begin in January. In December Rachel receieved a call that Kevin's team did not have a coach. She recommended they give me a call. I said I'd coach if Kevin and his best friend Kyle could be on the same team together. This way Kevin would know one of the other kids. I called Kyle's dad (also a friend of mine) and he quickly agreed to coach with me. Neither of us have ever coached basketball before, although we both played. It's been quite the responsibility with practice every Thursday and games every Saturday, but it's really brought me joy. It was quite clear during the first practice that Kevin was physically far behind the other kids. He looked like somebody who simply hasn't played organized sports before. What he didn't look like WAS A KID WITH CANCER. He's enjoyed this adventure, and we've stayed after practice to work alone. He's in physical therapy which hopefully will eventually help his strength, endurance and coordination. Kevin last played on an 8 ft basket, in the 4th and 5th grade league it's a 10 foot hoop. The first practice he couldnt' even get the ball to hit the backboard or rim. Now he's improved dramatically and making the occassional shot. We played today and won. Kevin was so happy! He played three 4 minute shifts (each quarter is broken into two four minute periods). Kevin enjoyed playing and I'm certain will continue to improve. A couple of parents know his medical condition, but most don't. This is exactly how Kevin wants it. Gtuy and I had such a great time coaching the first game, and even met at my house more then an hour before the game to go over strategy and line-ups. Kevin didn't even care that he's behind and certainly right now the least athletic on the team......He knows what he's been through, and appreciates what he was able to do. No special treatment, no extra breaks, he ran up and down the court the best he could (often losing the guy he was supposed to guard), but enjoyed every minute of it. We won a close game in the final minute and all the boys were giddy. Kevin, Jake, Kevin and I celebrated at DQ after the game. On the medical front Dr. Gajjar is out of the country and Kevin's next appointment has been moved to March. They didn't seem concerned, and said if it made us feel comfortable we could get him an MRI at Detroit Children's Hospital. Rachel and I still haven't decided yet, and aren't overally concerned about it at this point. He's been feeling well and improving in almost all areas. He does have some post radiation cognitive delay side effects, which sort of mimic ADD. However his writting has improved greatly, and he's still getting mostly A's on his test. Well it's Saturday night and I have plans. We enjoy reading about our st. Jude friends on their blogs, and both look forward to our next visit.Eric